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missymcc

Gluten Free Diet For Special Needs Child

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I am searching for help from anyone. My son has Down Syndrome and was diagnosed with Celiac in Jan. through a biopsy. he has been Gluten free since then. ( also no dairy )I'm sure we have missed it sometimes but we have learned alot in the past few months. He has yet to have normal BM's and still has horrible gas. The past 2 weeks he has had diarrhea and stomach aches. I am feeling very frustrated because his GI doctor keeps telling me to give it time. How much time does it take to see a difference? I feel like we are not making any progress. any advice would be great.

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Some of us can be quite sensitive. It pays to do detective work on everything that we put in our mouths, even though it's frustrating at times. It might not be a bad idea to try eating only natural foods-no products and see if that helps. OR use only those products that are made in dedicated gluten-free facilities. If you haven't already you may want to pay close attention to products that are manufactured on the same lines as other products that contain gluten. There isn't a clear cut definition of what gluten-free means so we really do need to read those labels carefully and call the manufacturers with questions. There are some who react to products that are made on shared lines, even if the lines are cleaned according to allergen contol proceedures and the products tested to contain under a given number of parts per million.

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It does take time and each person is different. Your dr is being honest when he cannot give you a definate answer.

It could be your child is still ingesting gluten from somewhere you thought was safe. Do you keep a food journal? That can be very helpful to you and your dr when trying to pinpoint symptoms. Also make a note of how your child is feeling throughout the day and maybe bm's also. I know this is a lot to ask. You are very busy already. But it really can be helpful and down the road there may come a time when your child is in school and in a group setting where you will need to communicate his dietary needs very clearly. The journal will help.

You are a great mom trying to get your child the best care possible. I admire how hard you are working toward his good health. Please keep posting any time you wish. We are here to hear what you need to say and ask.

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It does take time and each person is different. Your dr is being honest when he cannot give you a definate answer.

It could be your child is still ingesting gluten from somewhere you thought was safe. Do you keep a food journal? That can be very helpful to you and your dr when trying to pinpoint symptoms. Also make a note of how your child is feeling throughout the day and maybe bm's also. I know this is a lot to ask. You are very busy already. But it really can be helpful and down the road there may come a time when your child is in school and in a group setting where you will need to communicate his dietary needs very clearly. The journal will help.

You are a great mom trying to get your child the best care possible. I admire how hard you are working toward his good health. Please keep posting any time you wish. We are here to hear what you need to say and ask.

Thank you for your advice and support. We are going back to the doctor on Thursday. I did discover that he has been playing with regular playdough. :( I feel like that is some of the problem but not all. My kids are out of school for the summer so I am making them keep a journal of what he is eating while I am not there. My 15 Yr old daughter waches him while I work. He can be sneaky so we try to keep the things he can not have put up. We will keep trying. Thanks so much. I will keep you all posted on our progress.

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